Silent Night, Holy Night...

Silent night, holy night;  All is calm, all is bright....

Not a creature is stirring, not even a koi

(once water temp hits 50 F, mine hibernate till spring)

Life is good; a function of a peacefully sleeping boy and

peacefully hibernating koi.

Had a bit of a problem this year with over-propagation of the species!

New Year's Resolution: "google" koi birth control!

Social Justice: USA NearThe Bottom of the Heap

        We have not, as a country, taken care of most vulnerable people in our nation.  It is interesting that in the glamour of our electoral process, no one is addressing the fact that the "greatest nation in the world" fails miserably despite our abundance of resources.  Is it a wonder that the disabled are kept at bay and invisible?  Could this be the unstated mission of the Occupy movement and other unrest?  I somehow doubt that those concerned about the unequal distribution of resources are advocating the cause of the invisible disabled in the USA.  Who will speak for our kids?

          This was underscored in a report released on Thursday by the Bertelsmann Stiftung foundation of Germany entitled “Social Justice in the OECD — How Do the Member States Compare?” It analyzed some metrics of basic fairness and equality among Organization for Economic Co-operation and Development countries and ranked America among the ones at the bottom.

         

     Someone needs to save us from ourselves!

Special People... yuk!

       My son is a "special people"!  Well, that's what someone said.  In reading a friend's blog on accessible recreation, I was struck today by a comment which was left by a troll to a post on summer camps for disabled kids.  I simply wanted to strike back at stupidity and mindless PC.  Here is the comment:

Sounds wonderful! I believe it is important that every kid have access to camping and is exposed to our wildlife - disabled or not. The fact that the camp accepts special people under their care would give any parent peace of mind to leave their kids under the camp's care.


       What utter and unbridled bullshit!  Adam is not a "special people."!  He is severely disabled, medically complex, a spastic quad, non-verbal and non just about every medical word which could describe normality.  He is always happy and smiling and I love him more than life itself.

"Special Persons" Camp Policy

        Now what camp would want the boy for a couple of days?  I don't know a soul that would want the boy for a couple of days, exceptin' me and the wife.  Does camp prepare pureed meals and feed a kid for an hour per meal? What does it mean if he spits his lunch at you and smiles?  Does camp clear a mucousy throats and airways that the boy perseveres and plays with.  How does the camp get him around when he arches in his wheelchair?  Do you know the long, extensive process of toileting the boy (I'll skip the detail). How would you know if he's in pain?  thirsty? pissed at the program that you put on the tv?  How would you regulate his temperature?  Would you keep his schedule of supplements and cell salts?  What about cold laser treatments, acupuncture, shiatsu, and ABR exercises?  Oh, and what would you do when he hyper-ventilates?  This ain't no "special person"!  He isn't a "pillow angel" or any other angel.  He isn't god's gift to me or anyone.  Frankly, he's a pain in the ass, but I would readily give my life for him.
        Now, again, what camp would want this boy for a couple of days?  Accomodate, ADA, Sped him?  Give him a quickly rounded up aide?  Maybe a full time doctor or nurse?  Frankly, camps for "special people" offer programs to high functioning DS kids; to mild CP kids; to cancer kids; to AIDS kids, etc. etc.  They do not offer programs to kids like mine.

       Adam is not a "special people".  Handicapped?  Disabled?  Severely?  Medically complex?  Crippled? yes to this list, but no series of ADA modifications will make him a suitable camper.  I find that "special people" is a word for a Hummel figurine on a mantel, or a clay angel on the bookcase.  Call me crazy, but I find the word "special people" totally offensive because society does not consider him special, nor do many other people.  Pseudo-advocates for the disabled may find comfort in the words "special persons", I do not.  Call it what it is; calling it something else does not change his nature.
        Most amusing is the statement that "the camp which accepts special people under their care would give any parent peace of mind to leave their kids under the camp's care?"  Truly the most idiotic statement which I have ever seen in print.  Adam was under water for 25 minutes at a camp run by the leaders and trainers of a nationally recognized college level Outdoor Leadership Program.  Obviously this poster had a recent lobotomy.   Accept special people and no parent has to worry?  F.ck, what planet do you live on.  Read the liability release that parents have to sign.


2. Assumes all of the foregoing risk and accepts personal responsibility for any damages following such an injury, permanent disability, and death or property damage.


       In simple English, we accept "special people", but if your "special people" dies in our care or suffers a permanent disability, it ain't our fault even if we are negligent! You just need to get over it!  Don't you just love do-gooders who advocate for my "special person"?

Communicatin': Without Words, Clicks, Blinks, Twitches . . .

Adam, in all his glory!

     Now, if you have a severely disabled kid (Adam's 25 but he's still my kid) and you had one wish, what would it be?  Releasing hand and foot contractures? Straightening his spine?  Moving that old pelvic floor into proper position?  Magically curing the olde incontinence and digestive stuff? Having the boy walk and grab for stuff?  Or, could it just be communicatin'...telling you what hurts, telling you when he needs to be repositioned, telling you when he wants the channel on the tv changed, telling you when he wants you out of his face?  I would probably opt for communicatin' (although I have not discussed this with my wifey).
      Adam does communicate with a grimace, with a groan, with a spit, with a closing of his eyes and he's getting better on closing his eyes on command.  He also contracts more tightly when he's irritated.  I want more...that's my wish!  Of course, I want the other stuff, and the daily ABR is addressing the structure of his body.  I want more!  So I keep searching.

       I have been closely examining and talking with researchers at Brain Gate which is a collaborative effort of Massachusetts General Hospital and Brown University.  Clinical trials have been on going with certain populations who are essentially "locked in" since 2006.  The technology is not quite there but remarkable progress is being made.  Here is a brief description of this type of Brain-Computer Interface:

       A long-term goal of the BrainGate research team is to create a system that, quite literally, turns thought into action – and is useful to people with neurologic disease or injury, or limb loss. Currently, the system consists of a “sensor” (a device implanted in the brain that records signals directly related to imagined limb movement); a “decoder” (a set of computers and embedded software that turns the brain signals into a useful command for an external device); and, the external device – which could be a standard computer desktop or other communication device, a powered wheelchair, a prosthetic or robotic limb, or, in the future, a functional electrical stimulation device that can move paralyzed limbs directly. The following link described in detail the latest research: Here.  Or here's a New York Times article about a man using thoughts to control a robot. Also a "60 Minutes" episode about using thoughts to control movement.

   The sensor which is implanted is about the size of a baby asprin.  They are presently working on a wireless technology and refining the computer algorithms which translate thought via the electrical signals of the motor cortex into action.  Thought, plain and simple intention, can control computer screens, appliances, and robotic arms which may be near the kid.  An example of the technology would be if Adam wanted a drink, he thinks of his hand picking up a glass of beer and bringing it to his lips.  His nearby robotic arm would be directed to perform the action.  If he wanted to be left alone, he could think the thought, thoughts read by computer to display a keyboard and he could think letters or pictures or commands.  
     The technology is not here quite yet, but steady progress is being made to make it a reality.  This is the stuff of which dreams are made and the technology is not in the very distant future.  It is around the corner.
     The clinical studies are pretty much limited to brain stem stroke, ALS, muscular dystrophy, cervical spinal injury and motor neuron diseases.  The unit is expecting to seek FDA approval in the near future to include other "locked in" populations.  A limitation is that you have to reside within 3 hours of MGH...thankfully we are an hour away.  So contacts have been  made and we're on a list for future clinical trial consideration.  Just imagine the potential!
      Remember when we folks marveled at Buck Rogers, Jules Verne and H.G. Wells (younger parents won't have a clue about these guys).  I really believe that the future is here and will open up worlds for the disabled which were unimaginable yesterday.

       

ABR: New Protocols, New Directions, Changes: Fall 2011

Adam sleeping though an egg-rolling demonstration
on the shoulder pocket below the clavicle

       Well, we're back from Montreal ABR (Advanced Biomechanical Rehabilitation) and our latest evaluation and training!  Actually, we've been back for two weeks and we have finally integrated the exercises into our continuing bodywork with Adam.  Leonid, via video evaluation, noted that Adam's upper back is straightening and our work on his pelvic platform  is shifting his pelvis into the proper position.  His vertebral column is demonstrating a higher degree of flexibility.  When sitting, if he is allowed to tip to the side, his butt (can't think of a technical term for ass) stays flat on the chair and no longer tilts and follows the spinal column as if it was fused.  This vertebral flexibility is allowing him to sit more comfortably.

The lateral neck super-soft ball rolling exercise.
Remember, Phil, do not roll on the SCM  as Fehim
emphasized numerous times because its painful for the kid.

       So what's next?  We are focusing on his upper body, clavicles and shoulder pockets to bring volume into that area which should allow for a greater release of the arms.  Also, exercises focus on the top of the head and SCM ( sternocleidomastoid ) triangle.  This area of application had greatly improved his swallowing in a brief period of time.
       Additionally, we have applications in the lateral thoracic area (L1 thru L5) and across the lower lumbar area.  Working on his lower back will hopefully strengthen the fascia in this area and straighten the lower spine.  We are now up to 3-5 hours a day of ABR and finally decided to vacation one day a week.  

Placement of "egg" on the platform
behind the mastoid.

       The incorporation of the "egg rolling" has quickened the pace of change and 5 out of the 7 new exercises deal with egg-rolling.  We are amazed at the role of the fascia in the normalization of a structure which has been severely impacted by a brain injury.  Muscles and bones mean so little to functionality and mobility; the fascia holds the totality in place and the "fascial trains" integrate body systems into movement systems.  Amazing stuff!

Egg-rolling on the lower lumbar (L1-L5)

      Needless to say, we are excited about the changes which we can more readily visualize and we continue work to produce more change.  Adam is more comfortable in his body and we work to make him more so each day.

Coming Attractions:  A New Frontier....

       Equally exciting is a new clinical trial we have explored called a brain-computer interface where researchers have created a model in which a small aspirin sized chip and electrodes communicate energy across portions of the motor cortex.  The energy differentials are calculated by computer to determine intention to move arms and the intention is completed through computer interface.  If you think that you want your hand to turn TV on, the electrical charge in the brain is measured, translated by a computer algorithm to a computer to turn it on.  A robotic arm nearby can be controlled by simple thought!  Bizarre?  More in my next post!  Clinical trials have been underway since 2005 at Massachusetts General Hospital with people with ALS, MD, spinal cord injury and brain stem stroke.  Brain Gate is becoming a reality!
The same team is researching epilepsy which is unresponsive to medical management.

Neuronal sensor (size of a baby aspirin)

Toilet Seats: Cleaning Out Your Bank Account

       We just returned from ABR Montreal yesterday afternoon.  After 8 hours in the van with a kid who couldn't or wouldn't (non-verbal kids do get ornery) get comfortable in a wheelchair and was then slipping down on a cot that I secured in the van, I'm not ready yet to describe the ABR experience.  I'm sure the movies we got him to watch in the van lacked enough blond-female skin to make him pissy; "Bridesmaids" didn't quite pass muster.  So I thought I would post about toilets seats and fleecing handicapped kids' parents.  Here's why we are always broke.

        Adam uses a commode with a soft seat (because he has a bony ass) and a splash guard.  Only parents of handicapped kids know about splash guards, so don't ask.  So here is how we get fleeced by manufacturers of "medical " equipment and I use the word loosely.  I'll let the reader put the pieces together.

COMMODE:  (steel, portable, solid stable)  $40.00  US dollars

SOFT SEAT REDUCER RING WITH SLASH GUARD ( a bit of of soft rubber)

                  $320.00 - $220.00 (same item two sellers) US dollars

Just the blue ring, folks, nothing else
Adam's ring is a flashier blue!
BTW, the protrusion upward is the "splash guard"

A SUPER SOFT WALMART TOILET SEAT:  $14.00

       Let's see $320.00 US or 338.00 euros or 333.00$ Canadian loonies or 205 British pounds  or 1191.00 new shekels or 329 Australian dollars, etc.  We all know who's really getting wiped and it's not the kids!

CONCLUSION: A new toilet seat for the kid means MickeyD's for mom and dad!  Ah, the injustice which pervades the universe....